This Is MS Multiple Sclerosis Community: Knowledge & Support

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Hi Everyone, I am new to the forum. My first episode was in 1975 with Optic Neuritis, but I was not diagnosed until 1993 with RRMS. Until about 5 years ago, I did not have any significant disability, but have progressed to SPMS, so no relapses, only progression. I have never taken any meds, and have only relied on diet until now. I was accepted in the Tcelna study, and had the first infusion in August, and have had 4 so far. Next appt. is scheduled for early February. So far improvements, and no reaction to the infusions, I feel like I am either getting the placebo, or it is just not working. Visually all infusions have been clear. I have continued to progress, my as walking continues to decline, as well as bladder and bowel issues..

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Hi Tippy, I was on Tcelna earlier in the year. I abandoned the trial since I didn'tfeel any better and I felt that I needed IV steroids due to various symptoms. In May, I had a major relapse that required hospitalization, steroids ( for the second time) and a trip to a rehab center. MRI's done at the hospital revealed lesions in my cervical spine. I went from using a cane to wheelchair. I am now trying to manage with a walker, although I need the chair quite often. I take Tecfidera and my neurologist recommended Rituxan which the insurance did not approved ( they consider it experimental for MS). It seems that research is looking at B- cells rather than T-cells, like Tcelna is. Good luck in your trial. For me, I can't afford the risks of double blind study in which placebo is possible

Thanks for the response. I was looking into having HSCT done in Russia, and was already approved when I heard about the trial and figured I would take a chance on the trial first. Some people really have wonderful results with the HSCT (Stem Cell Transplant), the earlier and more active the disease is, the better the results. I have had MS for many years and worry that it might not stop the progression for me. Lots of people are in Russia now, and I know of a few that have returned in the past 4 months, but it is really too early to tell. It takes 2 years to recover from HSCT and the recovery period is like a roller coaster going up and down. I wish you luck, and hope for all of us that something will happen soon, that will change the path of MS to enable us to have healthy and active lives.

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